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Acknowledgments
1.
PART I. WHAT IS HUMAN FLOURISHING?
Rosemarie Garland-Thomson
2.
Daniel M. Haybron
3.
John H. Evans PART
Gregory E. Kaebnick
7.
Sheena Iyengar and Tucker Kuman
8. “Good
Josephine Johnston
9. Parental Responsibility and Gene Editing
Choice, Chance, and Acceptance
11. Unraveling the Human Tapestry: Diversity, Flourishing, and Genetic Modification
Robert Sparrow
12. Creaturehood and Deification as Anchors for an Ethics of Gene Editing
Michael Burdett
13. Recovering Practical Wisdom as a Guide for Human Flourishing: Navigating the CRISPR Challenge
Celia Deane-Drummond
Reprogenetic Technologies Between Private Choice and Public Good
Maartje Schermer
16. The Politics of Intrinsic Worth: Why Bioethics Needs Human Dignity
Gaymon Bennett
17. Bioethics Contra Biopower: Ecological Humanism and Flourishing Life
Acknowledgments
This volume is one outcome of The Hastings Center’s project “Gene Editing and Human Flourishing,” led by Erik Parens, Josephine Johnston, and Mildred Z. Solomon. That project was made possible through the support of a grant from the John Templeton Foundation. The opinions expressed in this publication are those of the editors and authors and do not necessarily reflect the views of the John Templeton Foundation. Kevin Arnold, Senior Program Officer for Life Sciences & Genetics, supported and guided the project. Invaluable editorial and research assistance was provided by Elizabeth Dietz and Ben C. Wills. Lucy Randall and Hannah Doyle at Oxford University Press welcomed and expertly shepherded this volume and two anonymous reviewers offered edits that strengthened its contents. The editors thank the volume’s authors for their insightful chapters and their engagement with both the issues and each other’s work.
Contributors
Gaymon Bennett, Arizona State University, Associate Professor of Religion, Science, and Technology, is the author of Technicians of Human Dignity: Bodies, Souls and the Making of Intrinsic Worth (Fordham University Press, 2015) and coauthor of Designing Human Practices: An Experiment with Synthetic Biology (University of Chicago Press, 2012).
Michael Burdett, University of Nottingham, Assistant Professor in Christian Theology, is the author of Beyond Genetic Engineering: Technology and the Rise of Transhumanism (Grove Books, 2014) and Eschatology and the Technological Future (Routledge, 2015).
Celia Deane-Drummond, University of Notre Dame, Professor of Theology and Director of the Center for Theology, Science, and Human Flourishing, is trained as both a scientist and a theologian. She is the author, most recently, of The Wisdom of the Liminal: Evolution and Other Animals in Human Becoming (Eerdmans, 2014) and editor, with Rebecca Artinian Kaiser, of Theology and Ecology across the Disciplines: On Care for Our Common Home (Bloomsbury, 2018).
John H. Evans, University of California, San Diego, Tata Chancellor’s Chair in Social Sciences, Associate Dean of Social Sciences, and Codirector of UCSD’s Institute for Practical Ethics. His most recent book is Morals Not Knowledge: Recasting the Contemporary US Conflict between Religion and Science (University of California Press, 2018).
Rosemarie Garland-Thomson, Emory University, a bioethicist and Professor of English, is a disability justice and culture thought leader and humanities scholar. She is the author of several books, including Staring: How We Look (Oxford University Press, 2009), and co-editor of About Us: Essays from the New York Times about Disability by People with Disabilities (Liveright, 2019).
Michael Hauskeller, University of Liverpool, Professor of Philosophy, writes about transhumanism and the philosophy of human enhancement and, more recently, on death and meaning. His most recent book is Mythologies of Transhumanism (Palgrave Macmillan, 2016).
Daniel M. Haybron, Saint Louis University, Theodore R. Vitali C. P. Professor of Philosophy, is interested in the connection between human nature and the good life. He is the author of The Pursuit of Unhappiness: The Elusive Psychology of Well-Being (Oxford University Press, 2008) and Happiness: A Very Short Introduction (Oxford University Press, 2013).
Sheena Iyengar, Columbia University, S. T. Lee Professor of Business, is author of The Art of Choosing (Twelve, 2010). Her research challenges the basic assumption that choice is always preferred and unilaterally beneficial.
Emma A. Jane, University of New South Wales, Senior Lecturer in the School of the Arts and Media, researches the social and ethical implications of emerging technologies. Her most recent book is Misogyny Online: A Short (and Brutish) History (Sage, 2017).
Bruce Jennings, Vanderbilt University School of Medicine, Adjunct Associate Professor, Department of Health Policy and Center for Biomedical Ethics and Society, is also Senior Fellow at the Center for Humans and Nature and Senior Advisor and Fellow at The Hastings Center. His most recent book is Ecological Governance: Toward a New Social Contract with the Earth (West Virginia University Press, 2016).
Josephine Johnston, The Hastings Center, Research Scholar and Director of Research, works on the ethical, legal, and social implications of emerging technologies, with a focus on genetics and human reproduction.
Gregory E. Kaebnick, The Hastings Center, Research Scholar and the Editor-in-Chief of Hastings Center Report, is the author of Humans in Nature: The World as We Find It and the World as We Create It (Oxford University Press, 2013).
Richard Kim, Loyola University Chicago, Assistant Professor of Philosophy, works on ethics, moral psychology, and East Asian philosophy with a view to deepening our understanding of the nature of well-being and relevant concepts, including emotion, virtue, and friendship.
Tucker Kuman, University of Virginia, is pursuing his PhD in English. He received his BA from Columbia University in 2013 and subsequently worked as a research associate in the lab of Dr. Iyengar at Columbia Business School.
Erik Parens, The Hastings Center, Senior Research Scholar and Director of the Initiative in Bioethics and the Humanities, is the author of Shaping Our Selves: On Technology, Flourishing, and a Habit of Thinking (Oxford University Press, 2015).
Dorothy Roberts, University of Pennsylvania, George A. Weiss University Professor of Law and Sociology and Raymond Pace and Sadie Tanner Mossell Alexander Professor of Civil Rights, is founding director of the Penn Program on Race, Science and Society in the Center for Africana Studies. Her most recent book is Fatal Invention: How Science, Politics, and Big Business Re-create Race in the Twenty-first Century (New Press, 2011).
Maartje Schermer, Erasmus MC Rotterdam, Professor of the Philosophy of Medicine, has degrees in medicine and philosophy. She has published widely on philosophical, ethical, and social implications of new technologies, especially human enhancement, neurotechnologies, early diagnosis and screening, concepts of health and disease, and patient autonomy and informed decision-making. She is chair of the standing committee on ethics and law of the Dutch Health Council.
Jackie Leach Scully, Newcastle University, Professor of Social Ethics and Bioethics and Executive Director of the Policy, Ethics, and Life Sciences (PEALS) Research Center, is the author of Disability Bioethics: Moral Bodies, Moral Difference (Rowman & Littlefield, 2008).
Robert Sparrow, Monash University, Professor in the Department of Philosophy, works on bioethics, political philosophy, and applied ethics.
Nicole A Vincent, University of Technology Sydney, Senior Lecturer in the Faculty of Transdisciplinary Innovation, and Honorary Fellow in the Department of Philosophy at Macquarie University, conducts research on a range of social, legal, and ethical issues raised by emerging technologies like smart drugs, blockchain, and autonomous vehicles, with a special focus on the notion of responsibility and futures.
Human
Flourishing in an Age of Gene Editing
Introduction to Human Flourishing in an Age of Gene Editing
Erik Parens and Josephine Johnston
In 2015, in the journal Science, a highly regarded group of scientists, science policy experts, and ethicists called for a public conversation about the ethical questions raised by a new technology that could be used to alter the genomes of human beings.1 Among these ethical questions were ones regarding safety. Most simply, could the new technology be deployed without posing an unreasonable risk of causing physical harms? The authors of the commentary in Science also alluded to broader ethical questions that have been raised ever since the 1970s, when it first seemed it would be possible to use gene transfer technologies to alter human genomes.2 These broader questions have nothing to do with medically detectable harms to people’s bodies: Might such technologies push us toward thinking of human beings in increasingly mechanistic terms? Might they push us toward ever-narrower conceptions of acceptable ways to be human? Might they undermine healthy relationships between parents and children? Might they exacerbate the obscene gap between the haves and have-nots? These harms are “nonphysical” in the sense that they wouldn’t immediately diminish the functioning of any bodily system. Rather, if they occurred, they would be harms to what we can call people’s psyches. They would do harm to people’s experience of being persons. They would threaten relationships and strain communities. The broadest form of the question concerning nonphysical harms is: might this technology be used in ways that would inadvertently thwart human flourishing? That is the question motivating this book.
But saying what we mean when we say we’re worried about nonphysical harms in general and about flourishing in particular is much harder than saying what we mean when we say we’re worried about physical harms. And it is that harder task we have set for ourselves in this volume. We aim for this collection to serve as a resource for people, including those who are not familiar with the formal study of bioethics, to engage in the sort of public conversation called for by the authors of the commentary in Science. It is through this public conversation that citizens can influence laws and the distribution of funding for science and medicine; that professional leaders can shape understanding and use of gene editing and related
technologies by scientists, patients, and practitioners; and that individuals can make decisions about their own lives and the lives of their families.
What We Mean by An Age of Gene Editing
The specific technology that precipitated the Science commentary is called CRISPR-Cas9, and in 2012 it was unveiled as the first in a series of so-called gene editing technologies.3 These gene editing technologies marked a huge leap forward in researchers’ ability to engage in what, since at least the 1970s, has been called “genetic engineering.” Whereas the older technologies only allowed researchers to transfer copies of whole genes to targeted genomes, the newer gene editing technologies allow them to make changes to as large or as small a part of a gene as they desire. The newer gene editing technologies also enable researchers to make such changes far more easily, cheaply, and reliably than was possible with the old-fashioned “gene transfer” technology.
The technical details regarding CRISPR-Cas9 and related gene editing technologies are complicated, but the basic idea is simple. These technologies can be programmed to target and then cut one or more specific stretches of DNA. The targeted gene can be shut off (deleted) or new DNA can be pasted in. Although CRISPR gene editing technologies are far more accurate than previously available tools, they can accidently cause unintended or “off-target” changes or fail to make all hoped-for changes, resulting in a mixture of edited and unedited cells within an organism (otherwise known as mosaicism). For an excellent written introduction to the technical details, you might consult Chapter 3 of the 2017 National Academy of Science report on gene editing.4 Numerous video introductions to the scientific details of CRISPR technologies can be found on the Internet.5
The ethical conversation about gene-altering technologies, whether of the old-fashioned gene transfer variety or the newer gene editing variety, has traditionally employed some basic distinctions. One of those regards the difference between efforts to alter genomes in somatic cells and efforts to alter genomes in germ cells. If the DNA in germ cells (including sperm, eggs, and early embryos) is altered, those alterations appear not only in the DNA of the people who are created from those cells, but also in those people’s children. In contrast, if the DNA in somatic cells (all the cells in the body that aren’t germ cells) is altered, those alterations are not passed on to future generations.
Another of those basic distinctions seeks to draw a line between treatment and enhancement uses of gene editing technologies. In the case of treatment, a disease-causing bit of the genome is deleted or silenced, with possibly a healthy bit pasted in. In contrast, we can imagine efforts to use the same technology
to enhance some human trait, where a healthy bit of the genome is cut out and a “better-than-healthy” bit pasted in. In principle, gene editing could be used to alter the somatic cells of living persons to enhance their traits, and it could also be used to alter germ cells to enhance the traits of future persons. Efforts of the latter sort are referred to as germline genetic enhancement and, if attempted, would be the most ethically controversial application of gene editing technology.
Those observers, however, who think it would be an ethical mistake to attempt germline genetic enhancement can find some comfort in knowing that, for the foreseeable future, it will likely be very difficult to achieve such interventions with respect to the traits that human beings in our society seem to care about most. The more we know about the staggeringly complex ways in which genes interact with each other and the environment to produce the sorts of enhancements that people might want most for themselves or their children—say, more intelligence, more musical ability, or more resilience—the less likely it seems that it will be possible to produce such traits by editing genes. That is, in practice, CRISPR technologies may not provide the level of control over the shape of our children and ourselves that critics dread and enthusiasts desire.
But this volume is not about any one technology, and it does not assume that it will be technically feasible to achieve the fabulous level of control that would be required to produce children who were more intelligent, musical, or resilient. Rather, it is about a large set of technologies that coexist with gene editing and are sometimes called “reprogenetic,” and it is about the increased level of control over the genetic makeup of our children that these technologies are already beginning to provide. The phrase in an age of gene editing in our title is meant to indicate that, while gene editing may be an emblematic technology for the time we live in, it is but one of many related technologies, all of which raise the same set of ethical issues.
Among the other technologies pertinent to our reflections here are preimplantation genetic diagnosis and prenatal genetic testing. Preimplantation genetic diagnosis allows a person who wants to become pregnant to choose which of several embryos with different genomic profiles she wants to have transferred to her uterus. Prenatal genetic testing enables people who are already pregnant to choose whether to bring a fetus with a given genomic profile to term. Neither preimplantation genetic diagnosis nor prenatal genetic testing provides the level of control over the genetic makeup of the child-to-be that is dreamt of by some would-be gene editors, but all of these techniques share the aspiration to increase control over the shape of future generations. It is that aspiration to control, and what it means for the prospects of human flourishing, that we reflect on in this volume.
What We Mean by Flourishing
When we use the English word flourishing in the title of this volume, we are thinking of it as a translation of the ancient Greek word eudaimonia, which Aristotle used to name what he said all human beings want.6 Other common translations of eudaimonia are “well-being” and “happiness.” According to Aristotle, human beings don’t want to flourish because they think that flourishing will get them something else like, say, power or money. Flourishing (or happiness or well-being) is what humans want for the sake of itself. It isn’t a means for achieving some other end that humans desire; it is the desired end that they desire. People want to flourish because they want to flourish.
So, what more can we say about the meaning of flourishing that is a bit less abstract? It can help to start by distinguishing flourishing from health. Everyone wants to be healthy. But people don’t want health for the sake of itself. They want to be healthy so that they can engage in activities that they find meaningful. They want to be at work in, engaged with, the world. For many human beings, those meaningful activities include engaging in various forms of loving relationships and in various forms of work.
As we try to get a bead on what we mean by flourishing or well-being or happiness, it’s important to notice that we are not talking about a psychological state, say of the sort people would expect to enjoy if they won the lottery or got a job promotion or received a rave review. We’re talking about an experience of being engaged in activities in the world that people find meaningful, which can actually entail temporarily painful psychological states. Being in loving relationships entails negotiating inevitable and sometimes-painful conflicts and, too often, entails the excruciating pain of losing to death the people we love. To be engaged in meaningful work can require sacrificing time that might be spent in other activities that would entail temporarily pleasurable psychological states. Yet both are paradigmatic instances of flourishing.
Flourishing is the experience of being fully alive, exercising whatever particular set of capacities we were thrown into the world with. And, as several contributors to this volume will remind you, flourishing depends less on the particular capacities that one has than on one’s opportunities for exercising them. A corollary of that view is that using genetic technologies in attempts to shape our children’s capacities is less urgent than the even more difficult (if less costly) business of creating environments in which people can exercise whatever capacities they have. The idea that achieving more control over the nature of children might not always promote their flourishing or that of their parents might sound strange at first, but that is one of the central claims we are exploring in this volume.
Acceptance Can Conduce to Flourishing
In the first section of our book, three authors open up the discussion from very different levels and perspectives, previewing themes and questions taken up in subsequent chapters. English Professor and bioethicist Rosemarie GarlandThomson, writing from her and others’ experience of disability, argues that for a greater openness to the fact that people with all sorts of bodies can flourish magnificently. She argues that to promote flourishing, instead of changing bodies or genes, individuals and societies should invest in changing environments in ways that make them more welcoming of different kinds of bodies. Philosopher Daniel Haybron introduces a very brief history of the idea of flourishing in the West before exploring the significance for human well-being of authenticity, a value that is arguably at stake when considering altering genomes to enhance human capacities. Sociologist John Evans offers a history of the way in which some prominent thinkers about public policy have, lamentably, discounted concerns about human flourishing.
In the next section of the book, three contributors pick up an argument introduced by Garland-Thompson: that one way to promote human flourishing is to honor the stance of, or attitude of, what might be called acceptance. We say “might be called acceptance” for at least two reasons. First, the word acceptance can have a connotation of passivity, which is not what our authors intend; accepting what is requires attention and energy. Second, acceptance might not perfectly capture the resonance of being grateful for or affirming what is, which some, if not all, of our authors do intend. Those caveats aside, acceptance is not a bad term to name the attitude or stance toward our children and ourselves that the authors in this volume are converging on. We should add that while they are converging on a defense of the attitude or stance of acceptance, they are surely not absolutist in that defense. They are doing no more or less than offering what they take to be a critique of the status quo—where the status quo assumes that more control, or more shaping, is better.7 They are making the claim that if human beings could became less preoccupied with transforming the bodies of themselves and their children, they might flourish more.
Philosopher Michael Hauskeller makes an argument that expands the notion of acceptance to the notion of cherishing. If people can learn to cherish children and the world as they are (as opposed to how people might think they should be) everyone would flourish more. Whereas Hauskeller draws on the insights of Western philosophy, Richard Kim draws on the insights of Eastern philosophy to make the case for learning to let things be. And philosopher Gregory Kaebnick explains that, while the case for accepting nature as we find it is under constant challenge today, that case can be made with intellectual integrity, and it warrants respect.
Choice and Control Can Be Overrated
To endorse the value of acceptance is of course to run up against one of Western culture’s fundamental articles of belief: that more choice is good. From three different angles, our contributors challenge that belief. Psychologist Sheena Iyengar and her collaborator Tucker Kuman, a former member of her Columbia research lab, write on the large empirical psychological literature regarding choice, arguing that it simply is not true that more choice leads to more flourishing. They offer the figure of the inverted U-shaped curve to describe the relationship between choice and sense of well-being: sense of well-being does increase with more choice, but only up to a point, where more choice is associated with a decreased sense of well-being. Bioethicist and lawyer (and co-editor of this volume) Josephine Johnston explores the possibility that good parents will, with a view to promoting their own flourishing, sometimes choose against availing themselves of the panoply of technological options on offer. Along very similar lines, philosophers Nicole A Vincent and Emma A. Jane argue that choosing to use reprogenetic technologies to shape one’s children should be an option, but in no way a requirement, for people who aspire to be good parents.
Seeking Balance between Competing Values
If we lived in a culture where there was too much emphasis on the ethical value of acceptance, this volume would have emphasized the need to remember the ethical value of shaping. But the contributors to this volume agree that in this cultural moment there is a bias toward the goodness of intervention and the value of controlling the shape of oneself and one’s progeny. And for that reason they are making the case for the goodness of eschewing intervention and for accepting our children and ourselves as we’ve been thrown into the world.
It is essential to notice, however, that no one in this volume is arguing that acceptance is an absolute or ultimate value. Indeed, their point isn’t that there is a single ethical value to be embraced, but a balance to be achieved between important ethical values that push in different directions. They are arguing for a better balance between control and acceptance—a point one of us (Erik Parens) has sought to elaborate previously.8
Four of our contributors, from very different angles, make the case for balance. Sociologist Jackie Leach Scully, drawing on interviews with laypeople in the United Kingdom, suggests that they, often much better than many professional bioethicists, recognize the profound importance of balancing commitments to control and acceptance when thinking about reprogenetic technologies. Philosopher Rob Sparrow is deeply impressed by the argument
from the disability rights community that accepting the fact of genetic diversity is important, and he also cautions against taking that argument too far: not all genomic diversity deserves to be conserved. Michael Burdett, who does research in religion, science, and technology, explains that mainline Christianity holds the ethical commitments to acceptance and to shaping in a fruitful tension. Burdett invites readers to see that they needn’t choose between, but ought rather balance, those commitments. (One of us [Parens] would argue that Judaism also seeks such a balance and would guess that any religious or cultural tradition that endures has to honor both commitments.) Theologian Celia DeaneDrummond offers an extended explication of the virtue of practical wisdom as a tool for finding the sort of balance that is required to deploy a technology like gene editing.
Seeing the Bigger Picture
The contributors to this volume acknowledge that gene editing, in working at the level of DNA, can do much good to advance human health. But they also want to say that, to promote human flourishing, human beings need to get much better at working at the level of the social. To promote more flourishing, societies need to get exceedingly better at building environments that support people with whatever genome they happen to have. And, our contributors are suggesting, building such environments will sometimes have to be accompanied by the articulation of some limits on the uses to which technologies like gene editing are put.
In her essay, lawyer, bioethicist, and race studies scholar Dorothy Roberts argues that a real commitment to the flourishing of the most disadvantaged members in society wouldn’t look first to genomics, but to building social environments that are more supportive of more people. Philosopher Maartje Schermer explains how the Dutch, in balancing the value of selfdetermination (held so dear in the United States) and the value of solidarity (held far less dearly), accept limits on some reprogenetic services that are made available. That is, the Dutch make peace with the fact that if to make basic reprogenetic testing available to everyone, they are not going to make nonbasic forms of testing available to anyone, regardless of ability to pay. Anthropologist and scholar of science studies Gaymon Bennett describes the development of the idea of human dignity and argues for deploying a rich conception of it to recognize and redress the powerful forces promoting the uses of technologies like gene editing. Finally, political theorist and bioethicist Bruce Jennings argues that to create just and sustainable environments that can support human flourishing requires a better understanding of the philosophical underpinnings of the view that gives technologies like gene
editing such a prominent place in society. He argues that doing so can help people cultivate the values of humility and restraint, which can seem to be in short supply in our age of gene editing.
Public Oversight and Public Conversation
The contributors to this volume all think that public conversation about flourishing is deeply important for making good public policy. And we are aware that citizens of democracies can resist engaging in such conversation for good reasons and for bad ones. A good reason is the desire to honor individual liberty. Public conversation about what human flourishing consists in for human beings in general can lead to constraining the liberty of individuals who have minority conceptions of what that concept means. A bad reason is the notion that conceptions of human flourishing are too “speculative”9 or “nebulous”10 to inform public policy.
In fact, the question isn’t whether conceptions of human flourishing can inform public policy. They frequently do. Though hardly the only, one of the reasons that policymakers make the policies they do is to promote the flourishing of their constituents as they understand it. So, the real question is whether policymakers—and others—are willing to be explicit about what their conception is or would prefer to leave it implicit. Plainly, the contributors to this volume want more explicit talk.
But how might more explicit public conversation about human flourishing and nonphysical harms inform public policy? Is there, for example, a way to directly plug such concerns into a public oversight mechanism responsible for a new technology like gene editing? To briefly respond to that question, it helps to consider some historical context.
The summit in Napa, California, out of which came the 2015 commentary in Science mentioned in the beginning of this introduction, was a sort of sequel to a summit that occurred in Pacific Grove, California, in 1975. The 1975 summit, referred to as “the Asilomar conference” (because it was held at the Asilomar conference center in Pacific Grove), occurred in the wake of the discovery that recombinant DNA could, at least in principle, be used to “engineer” somatic and germ cells.
Five years after the Asilomar conference, three religious leaders wrote a letter to then-President Jimmy Carter.11 Albeit in traditionally religious language about the dangers of “playing God,” those leaders were worried about what we here are calling nonphysical harms in particular and human flourishing concerns more generally. More to the point, those leaders suggested that, to manage potential harms, this new genetic technology needed “oversight.”
Two years later, in 1982, a presidential bioethics commission (which was created during President Carter’s tenure) responded to the letter from the religious leaders with the first national report on genetic engineering, Splicing Life. The authors of Splicing Life rejected the idea that it was possible to integrate concerns about what we are calling nonphysical harms into oversight mechanisms. In fact, the tone of that 1982 report was rather dismissive of such concerns.
Whereas the Asilomar conference was followed by the presidential bioethics commission’s 1982 report on genetic engineering, the Napa summit was followed by an international summit, as well as a 2017 report on genome editing from the National Academy of Sciences (NAS).12 When the authors of the NAS report on human genome editing looked back and described Splicing Life, they observed that their predecessors had taken the concerns of the three religious leaders and had “reformulated the ethical debate so that [their report] would be ‘meaningful to public policy consideration’ ” (italics added).13 This “reformulation” of the ethical debate meant essentially removing from the public policy table any questions concerning what we’re calling nonphysical harms—and what the NAS authors called “cultural harms.” The NAS authors wrote:
To make ethical claims legally actionable meant [that the authors of Splicing Life moved] away from arguments about future cultural harms or claims that it is not the role of humanity to modify itself. Consequences needed to be more concrete and near-term, not speculative. (italics added)14
Yet the NAS authors distanced themselves from this view. Instead, they concluded that the prospect of germline genetic enhancement raises “broader and longer-term social effects”15 that warrant careful consideration. In contrast to their predecessors, the NAS authors didn’t require that concerns be “concrete and near-term.” They didn’t dismiss such concerns as merely “speculative,” and they didn’t insinuate that the only people who might hold them are Luddites or religious kooks or people with what some more recent commentators have begun to suggest are hyperactive amygdalae. Instead, they called for sustained public reflection on these concerns.
The NAS report did not, however, begin to say how an “oversight mechanism” might actually integrate concerns about nonphysical harms into the creation of public policy. Instead, the NAS report called for public conversation, which might sound, at best, like a punt. This call for public conversation—or public engagement—echoes similar calls in other recent national and international reports, including the statement from the organizing committee of the first and second international gene editing summits. Because detail is seldom given about how to hold such conversation or how to feed it into policy, calling for public
conversation can begin to sound more like a mantra than policy-relevant advice. But it also might be the most reasonable thing that a NAS committee can say. It may be that systems as complex as modern societies just don’t admit of the sorts of “mechanistic” interventions into public policy imagined by the three religious leaders who wrote to President Carter back in 1980. After all, even the authors of the 2003 report on enhancement by the US President’s Council on Bioethics, who took concerns about nonphysical harms with the utmost seriousness, declined to suggest how such concerns might be integrated into oversight mechanisms. In the end, their primary policy recommendation was that the public move forward “with its eyes wide open.”16
The contributors to this volume are making the case for opening one’s eyes wide to the simple fact that, to promote human flourishing, one ought not first look to increase control over the DNA of children by means of reprogenetic technologies like gene editing. This is not to deny the value of using a technology like gene editing to cure disease. Nor is it to deny the value in some cases of the ability to alter the DNA of children. It is to affirm the value of acceptance and to suggest that if a society really cares about human flourishing, it will first create environments that welcome people with all sorts of genomes. Creating such environments requires social policies that invest in public goods like housing and public health and education. Alas, those efforts won’t usually require technologies that are as sexy or potentially profitable as gene editing, but they might deliver more flourishing bang-for-buck.
To create such policies, communities and societies need to talk together about what human flourishing consists in, which policies and practices and technologies can promote human flourishing and which can jeopardize it. Creating such policies should involve remembering what health is for, as well as what enhancement might—and might not—help individuals and societies achieve. Along with the contributors to this volume, we hope that this book will serve as a useful resource for all those who want to engage in that conversation.
Notes
1. David Baltimore, Paul Berg, Michael Botchan, Dana Carroll, R. Alta Charo, George Church, Jacob E. Corn, et al., “A Prudent Path Forward for Genomic Engineering and Germline Gene Modification,” Science 348, no. 6230 (2015): 36–38.
2. Michael Hamilton, ed., The New Genetics and the Future of Man (Grand Rapids, MI: Eerdmans, 1972).
3. Martin Jinek, Krzysztof Chylinski, Ines Fonfara, Michael Hauer, Jennifer A. Doudna, and Emmanuelle Charpentier. “A Programmable Dual-RNA–Guided DNA Endonuclease in Adaptive Bacterial Immunity,” Science 337, no. 6096
(2012): 816–821; Le Cong, F. Ann Ran, David Cox, Shuailiang Lin, Robert Barretto, Naomi Habib, Patrick D. Hsu, et al. “Multiplex Genome Engineering Using CRISPR/ Cas Systems,” Science 339, no. 6121 (2013): 819–823; Prashant Mali, Luhan Yang, Kevin M. Esvelt, John Aach, Marc Guell, James E. DiCarlo, Julie E. Norville, and George M. Church. “RNA-Guided Human Genome Engineering via Cas9,” Science 339, no. 6121 (2013): 823–826.
4. National Academies of Sciences, Engineering, and Medicine. Human Genome Editing: Science, Ethics, and Governance. (Washington, DC: The National Academies Press, 2017). https://doi.org/10.17226/24623, see especially Chapter 3.
5. For example, consult https://www.youtube.com/watch?v=2pp17E4E-O8 or https:// www.ted.com/talks/jennifer_doudna_we_can_now_edit_our_dna_but_let_s_do_ it_wisely#t-61154.
6. Aristotle, Nicomachean Ethics, trans. H. Rackham (Cambridge, MA: Harvard University Press, 1926).
7. Cf. Nick Bostrom and Toby Ord, “The Reversal Test: Eliminating Status Quo Bias in Applied Ethics,” Ethics Vol. 116, No. 4 (July 2006): 656–679.
8. Erik Parens, Shaping Our Selves: On Technology, Flourishing, and a Habit of Thinking (Oxford: Oxford University Press, 2014).
9. President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Splicing Life: A Report on the Social and Ethical Issues of Genetic Engineering with Human Beings (Washington, DC: President’s Commission, 1982).
10. Steven Pinker, “The Moral Imperative for Bioethics” The Boston Globe, August 1, 2015. https://www.bostonglobe.com/opinion/2015/07/31/the-moral-imperativefor-bioethics/JmEkoyzlTAu9oQV76JrK9N/story.html.
11. Claire Randall, Bernard Mandelbaum, and Thomas Kelly, “Letter from Three General Secretaries.” In President’s Commission, Splicing Life, 95–96.
12. National Academies of Sciences, Engineering, Medicine, Human Genome Editing: Science, Ethics, and Governance (Washington, DC: National Academies Press, 2017).
13. National Academies, Human Genome Editing, 120.
14. National Academies, Human Genome Editing, 120.
15. National Academies, Human Genome Editing, 156.
16. President’s Council on Bioethics, Beyond Therapy: Biotechnology and the Pursuit of Happiness (Washington, DC: President’s Council, 2003).
PART I
WHAT IS HUMAN FLOURISHING?
1
Welcoming the Unexpected
Rosemarie Garland-Thomson
We four women gather together for dinner whenever we can, often at academic conferences, for research trips, or when we find ourselves in the same city for professional obligations. We favor California-style farm-to-table restaurants these days, most always with good French wines. We are modern career women, each credentialed with a PhD, supported by a reliable income with good benefits, accommodated by advanced technology, and sustained by a network of colleagues and family. We are writers, educators, managers, institutional leaders, and recognized experts in our chosen fields. While some of us have husbands, none of us depends on them primarily for our social status or economic security. Although we have followed different paths to converge in these moments of professional fellowship, one aspect of our lives that draws us together is our access to unprecedented opportunities available to people like us in the last four decades.
We are part of the first generation of women who entered into places in America where we could accumulate the social and economic capital that undergirds a life of flourishing in liberal capitalist societies. Structural barriers in the form of males-only policies, laws, and practices kept women out of jobs, schools, military, government, clubs, sports, and public spaces of power and prestige and limited most American women to low-status jobs and domestic confinement. In short, gender restrictions before the policy and practice changes that began in the 1970s in the United States kept women from direct access to economic resources and consigned us to derivative status through husbands and fathers. Until the 1860s, married women could not own any property or have money of their own; until 1920, women could not vote; until the 1970s, women could not serve in the military, attend most prestigious universities, or participate in mainstream sports. We could be excluded from anything simply because we were women. In the first decades of the twentyfirst century in the United States, however, the condition of being female can even be an advantage now that most structural barriers that disadvantaged women and benefited men are removed. Indeed, some men have not adjusted to the current social and economic landscape that my friends and I enjoy. Living out our shared gender identity in an era of unprecedented opportunity
